hi, thank you for providing the brief history of your daughter. I can understand what you will be going through. Since you mentioned the history looking into it, I am able to figure out that your daughter is getting weaker as days are passed by. also, you been trying for all possible help you can from your side.. Now to look deeper into the case as per my understanding you have been trying alot of all possible things you can. But as per me there looks something missing here which even i am also not able to figure out. Diet, medication, physio also you have tried. What I am able to understand is there is lack of acceptance by the body to any of the Therapy induced. So the body is the self medication house of its own. Why don t you look ahead to do regular breathing exercises or an oxygen supplement. Since as per my experience with unknown cases with no diagnosis, there are symptoms of severe muscle weakness and also the fatigue and pain. For which I utilize the oxygen supplement to maximum number of time in a day as to imporve the oxygen in blood. As with the oxygen, our life is bound to oxygen and without oxygen the fitness of the cells cannot be possible. So oxygen therapy is the first thing I will recommend, as there need to be an improvement in her metabolic functions. Oxygen is the fuel for the cells to function and supply of oxygen will surely make some difference. Also, the next is to continue the medicine as guided and keep an note of each time to time medicine given. Like if the medicine is given twice a day, you should give the medicine with exactly 12 yours duration, and if it is 3 times you should exactly at the 8 hours duration. The pharmacokinetics of the drug also has a role here. Now for the drug to have a better absorptivity you need to increase the number of physio session from one day a week to 6 days. combination of oxygen therapy and physio will help improve the metabolism and the immune system which is needed for this time. the second is the combo of exercises with medicine will help the absorption of the drug to the optimum. Drug therapy, diet , pain management etc are all symptomatic. the medicine for the individual body is the body itself. So to allow the body to produce it s own medicine the body needs proper guidance at times as per our understanding. I hope the combination of breathing exercises, oxygen therapy, medicine and increase exercise will help your daughter s overall health . also to mention here keep the exercises session shorter of 15 minutes and repeat same as much as 5-10 times with intervals. General exercises will help better since the cause is not known yet. but the general exercises should include all the possible muscles in that 15 minutes duration. Don t increase the time as the muscle needs time to recover and improve. Also doing exercise along with the oxygen supplement will improve much of the cellular mechanism. which will help improve the pharmacokinetics of the drug and better absorption as well. You will a lot of research articles online about combination of exercises and oxygen therapy with better drug absorption. you can discuss the same with the physician of yours. Regards Jay Indravadan Patel